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There is no end. It's chronic.

Denial is a way of life for me. I’m not in pain. I didn’t get sick twice last night. I can make it through the day. I’ll be fine. I don’t need help. I could go without my medication today. I don’t need a doctor. I’m good. Today is going to be better. I'm fine.

When does positivity turn into denial? Am I lying to myself when I think, “You can do it, just keep on going.”  Or am I just staying upbeat? Where is the line drawn? Call it mind over matter if you want. I’ve always felt uncomfortable with that expression.

More than anything, I want a place where I can talk about my disease. No one talks. Denial is not just internal, it is forced on you. We all do it. When someone says, "It will just make you stronger in the end!" they negate and deny what I go through everyday. There is no end. It's chronic. 

You blame me for my disease, blame me for letting it get this bad, when at every turn you are denying me a place to talk about it. How messed up is that? I'm starting the conversation now. All I ask is that you listen. I expect nothing else. I need time and an open mind. I don't need you to make a sad face or offer solutions. I know your intentions are good. I know you care, and I can not tell you how much that means to me, but set that aside for just a moment and let me just talk. This is me, claiming responsibility. I have a disease, I will always have a disease, I am just trying to make it through the day, and all I need is to be able to communicate my experience.

These are some bits and pieces that I've written over the last year or so. Most of them were written as a tool to help me choreograph my capstone project for the dancemaking half of my degree. I think they pretty much speak for themselves. I do want to say, though, a couple of them seem rather accusatory. I'm not apologizing for this, because it is the way I felt, and still feel a lot of the time. I just want to say that my message is aimed at our culture as a whole and the way we are taught to deal with disease. I am constantly told (if not explicitly, then certainly implicitly) to keep my disability to myself. The woman at the Services for Students with Disabilities Office told me, "You're not disabled, you're just differently abled."Let me say that again. The woman working in the Services for Students with Disabilities Office denied the use of the word "disabled". She said it with a big smile on her face, clearly thinking she was being progressive and understanding. I just smiled back meekly and nodded. Inside I squirmed. I have worked long and hard to be okay with my disease and my body and the debilitating effect they can have on my life, and this kind of rhetoric is the reason I had to work so hard at it. We are simply not okay with disease or disability, and we do not want to hear about it. We do not even want to say the word, and so we come up with clever little turns of phrase that, on the surface level, sound affirming, but in actuality serve to ignore the disabled body. And the diseased or disabled know better than most, not thinking about something just makes it worse.

Comments

  1. As a parent, it is hard for me not to use the sad face. I can't but feel responsible for the fact that my beautiful baby girl will have to deal with pain, every day, for the rest of her life.
    What could I have done to stop this from happening? Made a better attempt at breast feeding? Fed you more protein? Less protein? Chosen a better pediatrician? Married into a different gene pool?
    When you see my sad face, it is not just for the pain I see you in at that moment, but the pain I know you have yet to experience.

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  2. Mom -
    You have to know that I wouldn't be me if you had done anything different. And, all in all, I am a pretty happy woman. Everyone has issues, mine are just more upfront in some ways. I have come to realize that it is okay that I have a disease, and that, in a lot of ways, it defines who I am. I am not saying it is a "blessing in disguise" (I can not stand that saying), but it has opened up an entirely new way of thinking that I am really excited about.
    Please do not blame yourself. I am more grateful to you and dad than I could possibly say, and this disease is just something that I have to deal with. It is not my fault, or your fault, or anyone's. Beyond that, it does not matter where the blame lies. What matters is how we react and deal with what is placed in front of us.
    I love you. Don't make a sad face. :-)

    ReplyDelete
  3. Maggie,
    My friend, Kellie Griffin, shared your blog with me as I have Chron's disease as well. I appreciate your thoughts that you have been sharing in your blog. What a wonderful way to take care of yourself and to help other's understand. One of the hardest things that I have found with this disease you also mentioned: people wanting to "fix it" or make you feel better when you just need someone to listen and love you unconditionally. As a young adult, I have found it difficult to find a healthy support group to identify with as we are at a different place in our life than most who are diagnosed. Know that I would be happy to listen! I cannot promise for better days or any wonderful cures, just a sympathetic ear! I won't post my contact information here but you may get this from Kellie if you are interested!

    ReplyDelete
  4. Maggie,
    This is a pretty strong post. You are right that many times people suffering from Crohn's are often stifled. Why shouldn't we be allowed the time to feel mad, sad, disappointed, or just plain sorry for ourselves? Not forever of course, but just some time.

    ReplyDelete

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Overwhelming Nuance - Dancing Crohn's Disease

Below is small segment of my Dance Studies Research Project, "Cripping Dance: Radical Representations of the Disabled Dancing Body." It's the bit I wrote about my own work, Overwhelming Nuance (excerpted below), which, as you will see, was inspired by the feelings of denial that so often accompany disease. 





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Oh, and have you guessed what my favorite color is yet?

What would your "Keep Calm" poster say? Make one! Share it in the comments! I would love to see it!